Me

It’s been ten days since I last updated you on my grandson’s progress. He continues to do well in therapy. He can walk moderate distances now, and has learned to roll his own wheelchair around. He appears to have control of all of his appendages, but has some issues that are being worked on in therapy.

He still has trouble with fine motor control. What this means is that he cannot control his fingers individually, so he eats like a small child by grabbing whatever he wants to eat in his fist, then cramming his entire fist in his mouth before opening his hand. That’s one thing that we have been working on with him- trying to get him to pick up food with just his index finger and thumb. I was using M&M’s to try and get him to feed himself.

He is still non-verbal. He can make the “f” and “s” sounds, but can’t seem to use his vocal chords on a voluntary basis, nor can he move his mouth for other sounds. This seems to frustrate him while he is trying to talk. I’ve been working on any word at all. The one he seems to enjoy shooting for is “fart.” After half an hour or so of trying he begins getting angry and stomps his feet. I can’t imagine what that is like, to want to communicate and be unable to. The family has been taking bets to see what his first word will be. I don’t care what his first word is, he can shout an expletive for all I care, as long as he can come back to us.

The therapists have given him multiple cognitive tests, and have determined that his thought processes are working fine. In fact, he is reading at a 5th grade level, so he is far ahead of where he should be.

There are a few personality changes that have become apparent. Foods that he used to enjoy, he can no longer stand. The neurologists say that this is common in people that have sustained brain injuries- as the brain rewires itself to route new pathways around the damaged areas, some things will be different.

All in all, he is making what they say is good progress, and is on the path to recovery. When that will happen is anyone’s guess, but typically it takes anywhere from a six months to two years to see a complete recovery. The goal right now is to get him to a point where he can be home schooled, so that we don’t see him fall too far behind his peers. In the short term, getting him moved from an inpatient status to home health care is on the horizon. We are hoping that he will be home with his family in time for Christmas.

It’s easy to forget that eight weeks ago was the last time he was well. Just six weeks ago, he was still in a coma and we were worried that he wasn’t going to survive. Three weeks ago, and he was still in the intensive care unit, with doctors telling us that he would likely be paralyzed for life. He continues to improve, one week at a time. Whatever the future holds for Rion, it will be better than the one he had just a week before.

A lot has happened with Rion since I last updated his story. He was moved from the ICU to the regular floor on Nov 9. He finally was able to start eating baby food the same day. On November 10, he was able to take a wheelchair ride and go outside for the first time in a month.

His physical therapy has been going well, and he has been making significant progress. Therapy began by putting a maraca on one ankle and jingle bells on the other, then had him laughing as he was able to “play music” with his feet. They eventually got him to the point where he was able to ride a large tricycle around the hallways of the hospital. Soon, he was walking up and down a small set of stairs with assistance. He was also able to use his hands to grip things. On the 15th, he did so well that he was able to use his wheelchair as a walker to walk from PT to his room. He doesn’t walk well, but he is getting stronger and better coordinated every day.

They pulled out his feeding tube and transferred him by ambulance to a children’s inpatient therapy center, where he will get more intense physical therapy than he was getting in the hospital.

He still cannot talk, but the progress that he has made in the past 17 days is truly remarkable. This morning, he actually was able to eat his first solid food since October 10. In case you are wondering, it was his favorite food- french fries.

I want to thank all of you for the prayers and well wishes, and want to thank everyone who donated to the GoFundMe page. All of it has been a huge help.

My grandson finds himself back in the ICU as of Monday. They are ordering another battery of tests. Nothing with him has changed, and that is the issue that the neurologists have. After clearing it with mom, I can share more with you about him.

His name is pronounced Ryan. His mother spelled it Rion. I know, right? He is active and sharp. At six years old, he is a good ice skater and plays hockey. He tests above grade level in every category. Or he did, before he got this infection.

I last saw him on October 10. Two days later, on October 12, he came home tired and went to bed early. He didn’t wake up for school on Thursday, so his mother went to check on him and found him covered in vomit. When she put him in the shower to clean him up, he had a seizure. She took him to the ED, and he was soon transferred to the ICU.

He didn’t wake up until October 20. He showed some deficits in movement and facial expression. That has since improved. He was soon transferred out of the ICU. The problem is that he hasn’t changed since. He is still in there- when I tell the fart jokes that little boys so often find funny, he laughs. When you tell him you are there for him and will have his back, he responds with tears. If you yawn, he yawns and stretches, too. He looks you in the eye, his eyes follow motion. But that is all he does. He won’t talk, won’t blink on command. Can’t talk, can’t swallow. Nothing voluntary. At least he still smiles when Granpa walks into the room.

That is why neuro is worried. The PET scan came back and showed abnormalities. The different parts of his brain don’t appear to be communicating with each other. They are saying that every day that goes by without any change, the chances of his deficits being permanent increase. Imagine what hell that is. His body is healthy. It appears as though he is fully aware and conscious. He will be trapped in his body, unable to communicate, to move, to do anything for 60, 70, or more years.

It tears me up inside to think that I may never get to teach him to fish. He will never again ask for horsey rides on my knee, that I will never again hear him say, “I love you grandpa.” What pure hell that little boy is going through. He is a prisoner in his own body, a fate more horrible than death. I really hope that the neurologist is mistaken, but every day that goes by with no progress is not comforting.

There is discussion of sending him to a larger hospital that is better equipped to handle more advanced neurological issues like this. I don’t know where that will lead or how it will happen.

I have set up a category so you can follow his story. A friend of the family has set up a GoFundMe if anyone is interested. All of the funds will go to my daughter to help with copays, bills, etc.

I spent last night with my wife, daughter, her boyfriend, and my other three grandchildren. We went trick or treating. I want to include a picture of my daughter’s two children, so all of you know who I have been talking about. That’s Ryan on the left, my grand daughter is on the right. This picture was taken less than a month ago.

All of this got to me while I was setting up a future post about his condition, I had to stop typing because I was overcome with emotion. My wife somehow sensed what was going on, called me from work and asked me to take her to lunch. She just knows when I am not doing well. I made a good choice when I decided to marry her.

Went to see the grandson today. Right after I got there, the Infectious Disease Doctor and Physical Therapy showed up. Things were a good bit better today.

When I got there, he was writhing in pain and crying. I saw that he was flat on his back, so we raised the head of the bed. The crying stopped. I played with him for awhile (piggies, fart jokes, silly child games that 6 year olds find funny). He made the first sounds other than crying that anyone has heard from him in 9 days. He laughed. It was the greatest sound in the world.

Then the ID doctor showed up with physical therapy. They got him out of bed, and he took his first steps in 8 days. They were awkward, assisted by the PT people, but they were steps. 4 of them. He needs a little help holding up his own head, he barely moves his arms, and it will be weeks or even months before he walks again without assistance, but it is progress.

It doesn’t look like he will have permanent, full paralysis. He may or may not have permanent weakness, but only time will tell. For a child who was on his deathbed seven days days ago, this is nothing short of a miracle.

The culprit, according to the ID doctor? An infection by enterovirus that somehow infected his brain and caused massive amounts of swelling. In other words, viral meningitis.

He is still in the ICU, and we continue to wait and watch.

My grandson’s name is Ryan. At about 1100 this morning, he decided that it was a good time to open his eyes. He even smiled when his mother made a fart joke to try and get him to laugh. His mother, his nurse, and myself were moved to tears.

His smile is crooked, indicating a possibility of some sort of neurological deficit. (If you will remember, the virus he was hit with frequently results in paralysis) He still hasn’t spoken a word in 8 days, but for the first time in 5 days his eyes are open and he is interacting with those around him.

Neuro will be evaluating him for function and deficits. The fact that he is again awake is a major improvement. We continue to wait and watch for any signs of what is to come.

I want to thank each and every one of you who has taken the time to comment, email, and wish or pray for his recovery. You are all too numerous to thank on an individual basis, but your support and care is of immeasurable benefit.

With regards to my grandson: I spent most of last night at the hospital. I got the opportunity to look over his labs, and they all looked as normal as any child’s. The doctors were performing every test imaginable. He now has a feeding tube, and has been having seizures off and on all day.

They believe that they have finally identified the culprit, and the news is not promising for full recovery. It looks like he has acute flaccid myelitis caused by his being infected with a strain of enterovirus called EV-D68. From what doctors can tell from examining him during the short periods of time that his eyes are open, it looks like his left arm is not working.

It appears like the virus has been hitting children in the US pretty hard for the past few weeks. There is no vaccine, and there is no real treatment. In my grandson’s case, permanent paralysis and even death are possible. If it is in fact determined that this is what he has, the best we can hope for is permanent paralysis of at least one of his limbs. What a tough thing for a six year old child. My heart breaks for my daughter.

For now, they are starting him on a course of corticosteroids, continuing the IV immunoglobulins, and they will be transferring him to UF Shands in Gainesville for more care. Transferring him to Shands is both a blessing and a curse. It’s a great hospital, but the fact that he needs to go there is not good news. It’s serious enough that the CEO of the hospital where he currently is has personally gotten involved with the case.

I can’t visit tonight, as the ICU only allows for three people to visit at a time, and one of them is of course my daughter, so the family is setting up visitation schedules.

For now, we await the results of the testing.

Blogging continues to be on the back burner. My grandson’s condition has changed little, or perhaps a bit worse. He began having seizures last night. I appreciate all of the thoughts, well wishes, and prayers you have sent my way.